ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: pearchica on January 05, 2007, 07:30:09 pm
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Hey Gang: I am a recently diagnosed vestibular Shwannoma. I have been researching for about 3 weeks now. My original surgeon in Sacramento is recommending surgery to debulk the majority tumor and then gamma knife the rest so my facial nerves are preserved. I have sent my MIR's to the House Institute (Los Angeles, CA) and I am also going to go to Stanford ENT(Palo Alto, CA) for more information. Any sources I should consider for further research? By the way this forum as been a world of relief. I wish I had logged on 3 weeks ago. I made the mistake of telling my family prior to my consulation with the surgeon and consequently gave the family some outdated information ie: 16 hours of surgery according to the ENT guy when in fact it is 3-5 on average. (Family also was visualizing coffin depsite my reassurance that this is a BENIGN tumor ;D).  My balance test shows that my right ear is compensating for my left (where the VS is). Overall I feel no rush to get this thing out, I don't have dizziness, I do have hearing loss (about 50%) and really compared to the other maladies out there, I feel like I am getting off good. (Easy to say now as I haven't done surgery, gamma or ck).Thanks in advance for your support and hard work.
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Good luck in your search - can I just say beware surgery prediction times
sometimes the person making the prediction means
how long their "bit" is....ignoring the fact that
the team that follows to patch up/finish off
may take another two hours or more
- in any case its not a job to rush to finish early
Family may panic a bit if they think things are running behind the clock
keep it vague
Best regards
Tony
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Welcome to the family. You seem to have a few goood options alright, and the right attitude. Just to let you know, Dr Chang at Stanford does both radiosurgery and microsurgery, so he might be a good person to talk to.
Good luck with your search.
Lorenzo
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Hi,
It seems that you have picked some of the best places around. Please make sure that you are comfortable with your doctors, you are putting your life in their hands. Go with your gut feeling. I wish you the best with your research. If you choose to go the surgery route, I can help you with that (House). Just shoot me an email. If not, there are a bunch of people on this site that can help you with the less evasive route. Good luck to you! Ann
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Welcome to the forum Pearchica:
It sounds like you are well on your way in finding the right doctor for the job.ÂÂ
Have you read anything on the Skull Base Institute? If you decide on surgery, you might want to give them a look. There have been a few forum members that have had surgery there recently and they are very happy with the results. At SBI, they use the endoscopic approach so the hole in the skull is the size of a dime.
Hopefully, your AN is in such a place that radiation can be an option for you. Surgery is no picnic, but its not the end of the world either. If you have surgical questions, you can write to me anytime. I am the same as I was before surgery only I am tumorless (yippee) but deaf in the left.
Good luck and I will be watching for updates!! Kathy
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I echo Lorenzo, I had CK treatment at Stanford in October and I am a Kaiser patilent. I did a lot of research on both open surgery and CK and believe that it is well worth your time to throughly explore the options. The forum has been invaluable as well as the Cyberknife patient support site. Stanford is an excellent choice especially if you want to consider CK as they do both. I understand that the House Ear Clinic is also now doing both although their expertise and experience is open surgery.
I am happy to have personal contact with you if you would like more detailed information. I live in Petaluma so we are "sort of" neighbors. A few of us have talked about a Northern California gathering of AN'ers at some point.
I wish you well in your journey.
Bev
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Wow everyone! Thanks for the great input- I REALLY APPRECIATE it- Annie
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Welcome Annie!
Welcome to our world! ;D I think you are looking at 2 great places to get this work done. You are right, it's not coffin time, and with your 2x2, you have plenty of time to consider options. In speaking of your family, I can tell you that no matter what, it will rattle them...my mom's dad was a surgeon and she knows medical stuff inside and out, but she said that didn't matter, no matter how old her child was, it still freaked her out. I was really surprized at how it messed her up the first 2-3 weeks after surgery, and she was my caretaker! You also have quite a few great patient resources in your area, as did I, and it really helped me to meet some of them...I would highly reccomend it.
Keep us updated on your path!
Kathleen
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HI Annie and welcome. Boy your positive attitude comes through in your type! Keep that attitude!!!
Surgery times vary and make sure you stress to your family in the waiting area that just because the dr said 5 hours doesn't mean it will not take longer. I was told 6 and mine was 9. My parents were beside themself with worry those last 3 hours. I guess I decided I was tired and started given the doc fits LOL They can't tell if the tumor is going to be sticky or encapsulated until they are in there. Sticky means they have to go slower and peel each layer off like an onion skin and you dont' want them rushing that to beat the clock!
Sounds like you are doing your research and making sound choices..they can just wait on picking out a coffin! We all have too much life left to live! Please know we are all here to answer any questions or concerns you may have, listen to you vent and celebrate your joys. We're one big happy cyber family here!
Michelle
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pearchica:
Just wanted say 'hi' and tell you that you seem to be totally on the right track.
As my signature shows, I had a large AN 'de-bulked' via microsurgery and then underwent FSR treatments for 5 weeks. No real complications from either treatment and my pre-op symptoms disappeared following the surgery. I'm fine, now, some 7 months post-op and 3 months post-FSR. This two-tiered method seems to be the trend in treating vestibular schwannomas (more commonly known as acoustic neuromas) - especially larger tumors. Keep researching. You are geographically located where access to the best doctors and facilities are, so I'm sure you'll be fine. Keep up the positive attitude. AN's are a hassle but can be dealt with successfully. You will.
Jim
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Hey Gang: thanks for your support these past weeks. I really appreciate it. Second opinion from Dr. de la Cruz at the House Institute was that I have a translab for complete removal with no radiation treatment. I had my third consultation today with Stanford ENT who recommended that I have a regtrosigmoid with the hope that we have a 5-10% chance of hearing conservation- no radiation treatment. I have decided to go with Stanford with Dr. Robert Jackler as he is the head of Stanford ENT and is the first to suggest that I might have at least a chance of hearing conservation. So I'm scheduled for surgery Valentines Day. Stanford "the home of the cyber knife" felt it was not in my best interest to have cyber knife given that chance albeit small for hearing conservation. Also Dr. Jackler gave me the rationale behind why cyber not good for me, ie: young, don't know long term outcomes, you are are pushing the medium size range 2.5CM of the tumor sizing system and once radiated, no hearing in left ear at all... So I have decided to go under the knife and am scheduled for surgery 2/14/07. Will keep you posted- thanks-Annie
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Hi Annie,
Congratulations on your choice of Dr. Jackler at Stanford for surgery on your AN. I know from your previous posts that you certainly did an excellent effort of researching various options. I am very familiar with Dr. Jackler as I consulted with him when he was at UCSF when I was trying to make my decision and would consider him world class. So if you are comfortable with the surgical choice , then you are in great hands with him. However, I also know he is a pure surgeon and anti radiosurgery because it's not what he does. So, if you directed your inquiries about CK to him as opposed to Chang (who actually does both cut and zap AN's) , Adler, Shuer , etc who work with both options I would be concerned that you got a correct view of that option.
So for others who may read this post I think it is important to clarify the statement "Stanford "the home of the cyber knife" felt it was not in my best interest to have cyber knife. Factually, Stanford uses radiosurgery for over half the AN's it sees and a higher percentage of those under 3 cm. Any Medical center is a collection of docs who all have different specialties and opinions. Jackler is head of the Neurotology section who specializes in AN surgery just like the docs at HEI and it sounds like you got his opinion which is precisely what I got over 5 years ago when I was 44 as well. Knowledge of a treatment option is physcian specific and experts in both can be found in any world class medical center, but their individual opinion does not suggest that it reflects the consensus of many unless it goes to a forum such as a tumor board.
That being said, I am certainly very supportive of your choice and would again say that I would have Jackler on the top of my list if I was having surgery as well. Best wishes to you for a great outcome
Mark
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Hi Annie and welcome!
Wow! LOVE your positive energy! Like you, I just "rock and rolled", took the bull by the horns, researched and reached out to others for inputs/suggestions and was ready to go on.
You are in FAB hands at Stanford, as you already know... and by having your surgery on Valentine's Day (btw, I'll be an old lady that day), know that your surgical day will be filled with the love and support of all of us here! :)
Welcome aboard and please keep us updated!
Phyl
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Thanks Mark and Brucifer for the input- I do agree with you surgeons are biased towards surgery! I do think it's a great idea to give Chang a call- I guess my only questions with those who have had cyberknife done, do you still have hearing? (I'm assuming you do..). You will both get a kick out of this- Jackler gave me a huge handout on his chapter in a textbook about - you guessed it surgically removing a AN...and I don't doubt at all the business motivation involved in all this. House Institute was politely quiet when I told them I was going with Stanford- reminded me of the ad "lost another loan to ditech". What have been your basic motivations for avoiding surgery (Brucifer you are at no risk I am assuming at this early stage in the game and Mark- is it whole sheer invasive procedure of the deal?). Thanks both in advance- Annie
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Annie,
I had CK done here in Boston last April (almost 10 mos ago). My hearing is almost what it was at time of treatment (just a hint below)... at time of treatment, my hearing in my left (AN) ear was just at the bottom of the "normal" range, with issues for low tones and voice recognition at 100%. My last one (this past October) showed my left ear just below the "normal" range, still issues with low tones, voice recognition at 96%. My next hearing test is in 2 weeks...
For me (and this is only my attitude, so I only speak for myself), my preference was " go non-invasive first, then, if need be, go invasive"... but, that does not apply to everyone. My family wanted me to have it cut out since I lost a sister to a brain tumor (malignant childhood growth).
Annie, overall, my hearing is fine, I use my AN ear as my "phone" ear and except for a hint of loss (last test showed that from previous test, I lost approx 10-15 db), overall... I hear fine and... got word in December that the AN is dying it's slow death (beginning stages of necrosis)! But don't tell my spouse... He thinks it's selective hearing! :) I use my AN as my excuse.. shhhhhhhh...
Phyl
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Phyllis thanks for your repsonse- I did call and I have an appointment with Chang for next week. Again, doesn't hurt to get a second opinion within the same group of doctors. And great info- I know my family seems to be freaked by the whole radiation thing ( but then they have been freaked about this from day one- nice to be loved!). Take care, Annie
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Thanks Brucifer- you are right on with leaving no stone unturned. I worked through my referral coordinator at my primary care physian and ended up with an appointment with Jackler, although my paper work said Chan (not Chang). When I called to get clarification it was the day before the appointment so I went ahead with the appointment anyways. Although I did question Jackler about the option and he gave a very good explination, of course he recommended surgery and we (my husband and I) scheduled accordingly. Ironically, I was having a gut check this afternoon, checked the website and found both your response and Mark's validating the gut check that I hand't done all my homework. So I called the office directly and have Chang next week. Thanks for the posting, I really do appreciate it. I do have time, and I can always cancel and or reschedule surgery to a later date if that's the ultimate option. Thanks again for taking the time to contribute to the postings. Annie
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Oh and Phyl- thanks for the report- what do you mean you are and old lady! (I think I am one year yonger and no way do I think I am old HA maybe that's my problem). Thanks for the posting- inbetween you, Brucifer and Mark, you all validated my gut check today. I really appreciate it- Annie
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Hi Annie,
Thank you for sharing that you were going through a "gut check" today. I thought it was worthwhile in my last post to at least raise the issue that Dr. Jackler, while a great AN surgeon, really is not a great source of information on radiosurgery as an option. ( by the way he gave me the same "book" of his An publications, very sobering reading)In essence his response will always duplicate what you get from a doctor from HEI. To use an investing analogy, people who own 20 mutual funds that are all classified as containing large growth stocks think they're diversified, but really probably own the same stocks in each fund. Similarly, 20 neurotologists like jackler or the docs at HEI will all give the same answer re: surgery vs. radiosurgery. That being said, in raising an issue like that I am very sensitive that it doesn't come across that I am ever challenging anyone's decision. There is never a right or wrong in this, just what each individual feels is the best choice for them.
However, I am very glad to hear that you are set up to see Dr. Chang. I would echo Bruce's sentiments that he will provide you a very accurate view of radiosurgery as an option based on your circumstances. Whichever way you end up deciding to go, you can truly say you heard both sides after that visit. Most folks who post on this board would probably say they have a lot of confidence in the docs who finally treated them and I am certainly no different in my view of Dr. Chang. He is one of the few that actually does both options equally and will actually answer the question " what would you do if this was you or a member of your family?" In fact, if you look in the archives of this forum for posts from "CC" you will see her recap of an e-mail exchange with Dr. Chang and the questions she asked which may be of interest. ( Since Phyl is now a high paid web policewoman for this site, maybe she knows a quick way to find it ;D, just kidding Phyl)
Regarding your questions in the previous post, the most complete explanation of my decision rationale is probably found in my story posted on the CPSG site. In short, while not a clinician, I have been in the medical supply business dealing solely with hospitals for over 25 years and I understand the risks of open surgery, especially a major one like a craniotomy, so yes, if that was avoidable it was a factor for me. More importantly, I weighed the probable outcomes based on all the studies I could find and made my decision based , in descending order, on tumor control , facial nerve preservation, possible treatment complications & hearing preservation. In terms of the latter, my hearing today almost 6 years out is unchanged from what it was before treatment. I think the facial nerve preservation issue was probably the biggest differentiator and I think the stats clearly favor radiosurgery in this area. Actually, what I remember doing was scrolling through this web site and checking how many references to facial palsy / dry eye were made by surgery and radiosurgery posters. The sample would probably be more realistic today than when I did it since there is a larger universe of radiosurgery posters active. So those were some of the things I thought about in my process.
So good luck to you in your meeting with Dr. Chang and , if you remember, tell him I said "hi". Either way you go, please know you are in extremely capable hands as both he and Dr. Jackler are very much world class clinicians. ironically, if you do opt to do the surgery , you may have Dr. Chang in the OR as he is one of the neurosurgeons who partner sometimes with Jackler in AN surgeries ;)
Best of luck to you
Mark
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Annie,
I found this old thread in the Archives that may help with a little hint of info from a microsurgical and radiosurgical viewpoint....
http://anausa.org/forum/index.php?topic=2000.0
Initial help.... this web policewoman now off to find CC's thread! ;)
(thanks Mark!)
Phyl
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Hmm...some people will go to great lengths to make sure they get flowers on valentines day! Geesh!
Annie wishing you all the best on that day!
Pearly girl you too! You ain't gonna be old you're gonna be spunky!
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Annie,
I found the old post from CC and will copy it below for your review. I thought I'd better save Phyl from looking for it :D.
( BTW Phyl, Looking through the archives is a real pain now in this new format)
Mark
Re: Stanford Cyberknife
« Reply #9 on: September 28, 2005, 09:07:22 AM »
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Thanks to all for their comments and assistance - especially Mark whose magic seemed to help things along.
I was provided with Dr Chang's e-mail and the e-mail of a nurse pratitioner in the clinic at Stanford. I sent off my questions to Dr Chang yesterday afternoon. By the time I logged on this morning (9am DC time) he had replied to all my questions. In the interest of wiping Stanford's slate clean here is the nurse practitioner's reply:
"we have 3 nurse practitioners who work in the Cyberknife team. We do a weekly pro bono review of outside scans a week. We literally review dozens of scans each week to help people with decisions on treatment. Usually we try and call the patient to discuss the review. It is rare that we just send an e-mail. I will give Dr. Chang an opportunity to answer your ?s. If you wish to talk to me – you can call me or the other 2 nurses anytime."
I also thought that some may be intersted in Dr Chang's replies to my questions. They're questions I think most people would ask in a consultation and his answers are considered and in plain english (always a good thing - shows he knows his stuff). So here are my questions and his answers:
1. On the basis of the position of my AN in the CPA and its protrusion from the IAC what do you judge to be the relative risks of CK and surgery (which I understand would have to be done through the sub-occipital approach)?
The surgical risks of the surgery include the usual infection, bleeding, stroke, anesthesia, etc. The specific risks to the hearing nerve for a tumor your size is at least 90% chance of hearing loss even with a suboccipital approach. The risk of facial nerve injury would be on the order of 20-25% with surgery. The risks of facial nerve injury with cyberknife is less than 1%, but again, that is an average, so it is possible to have facial injury with radiosurgery. The probability of maintaining your hearing is at least 70% with radiosurgery, but that means 30% may have some decrease, with the average decrease being 12 dB and an occasional rare patient having complete hearing loss
2. As you may be aware I am a musician and a key goal in treating this is retaining my hearing given that it’s highly serviceable in the speech range (and <20dB difference between left and right ears). I am attracted to the CK approach. Can you tell me precisely what your outcomes are for hearing preservation and tumor control for a 1.77cm AN?
2. As far as hearing preservation, the risk with the cyberknife is not related to tumor size to any significant extent (unlike surgery) so I cannot make a generalization as to how 1.7 cm ANs do. The average hearing preservation rate is 74 to 77%. The average dB decrease in all patients (those 70% that maintain hearing and the 30% with decreased hearing is 12 dB). Incidentally, hearing loss at the time of presentation is also not necessarily correlated to size of tumor. I have many patient with a AN over 20 mm that have normal hearing, and other with decreased hearing at 5 mm
3. If I was to have CK what treatment regimen would I undertake? How many fractions, what dosage (including how much total dosage) and why?
3. We use 18 Gy in 3 treatments of 6 Gy each. We feel that is the best balance between dose to kill the tumor and minimizing risk to the hearing nerve. We have used 3 treatments for 12 years now, and our current dose of 18Gy has been used since 1999.
4. Would you be so kind as to explain the process – how the Accuray machine determines the position of each “shot�? Would you also advise who does the programming? Do you supervise the procedure or do you delegate it? If so, to whom do you delegate?
4. The choice of the positioning for each beam is chosen by the computer. The doctors input the tumor volume, and the computer calculates the optimal beam positions based upon the millions of possible iterations. The beam positions are not chosen by a human, but by the computer, so there is not any human input as to the choice of beam positions, and therefore nothing that gets delegated since it is all done by the computer.
5. What is your measured error distance for the “beam�?
5. Total clinical error is between 0.9 mm and 1.1 mm for the treatment. The largest sources of error 0.6 mm actually comes from the errors intrinsic to the CT and MRI images.
6. How long have you been using this particular protocol? When did you last change your protocol?
6. We have been using our current protocol since 1999, with no changes.
7. Given no complications, at what frequency would I need to have follow-up MRIs?
7. We typically request MRI and audiograms every 6 months for the first two years, and then once a year for the next two, and then every 2 to 3 years after that
8. Every surgeon to whom I have spoken has recommended surgery, and every radiosurgeon radiosurgery. Would you give me a medical reason why in my case CK is preferable over surgery? Is the tumor sitting side by side with the cerebellum? If so, and swelling occurs post CK treatments, what damage (and symptoms), both permanent and temporary can I expect? I am currently reasonably asymptomatic for an AN of this size.
8. I can't speak for other surgeons, but I do both open surgery and radiosurgery, with roughly a 50-50 balance between the two. Last year I treated 600 patients, with brain tumors, with slightly less than 300 going to the operating room and slightly more than 300 receiving the Cyberknife. I operate on large acoustic neuromas, and I do radiosurgery on most others. Since I do both, I try to choose the best treatment option for each patient. I presume that the other physicians that you mention may only do surgery, for example, but I know of very few people that do radiosugery than do not do open surgery. I suspect that those that you have spoken to also do open surgery, but I also suspect that those that you have spoken to regarding surgery only do surgery.
Radiosurgery is not zero risk, but the risks are much lower than open surgery. I base my recommendations in your case on what I would do if I had this tumor or if it were in my mother or father, and if it were me or them, I would choose radiosurgery. Each patient needs to make their own decision however, so you would need to choose what you feel comfortable with.
I'm pretty happy with the comprehensive replies to my questions. And, although I offered payment for a phone consultation he refused as apparently insurance companies define "consultation" as a physical examination of patient by doctor and this obviously can't be done over the phone. So there you are. Seems this whole episode may have been a glitch in the system but good to make them aware when things go awry. I would probably have just gone eslewhere had it not been for Mark's intervention. Lesson to the wise I guess. I just wait to get House's diagnosis today - primarily to compare information - I really don't want anyone going into my head at this stage now. Maybe in 10 or 20 years but not now.
CC
Report to moderator Logged
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CC
3cm AN
CK Oct 05
with Dr Chang at Stanford
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Gang: Thank you! Wow, I am always so impressed by this group's passion. Phyl- like the new picture- Mark and Brucifer- don't worry, I am the youngest in my family and have 4 older brothers so I am used to the male uncensored opinion! HA! (BTW- very intesting that Mark is in the medical supply industry- that explains your knowledge). So we will see what Chang says come Wednesday. Again, thank you for taking the time to care about me- it really is wonderful and supportive. Annie
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I made the mistake of telling my family prior to my consulation with the surgeon and consequently gave the family some outdated information ie: 16 hours of surgery according to the ENT guy when in fact it is 3-5 on average. (Family also was visualizing coffin depsite my reassurance that this is a BENIGN tumor ;D).
They sound like my ex-husband. I posted an entry on my LiveJournal about my diagnosis, and he promptly sent me a condolence card on my having cancer! He then got very pissy and called me a control freak when I rejected his kind attempts at sympathy and sent the card back.
I think you can see why we're not married anymore... ;)
Lisa
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Annie,
All the best for your meeting with Dr Chang, he is a wonderful man. He was my radiosurgeon too. Looking forward to reading yhow you got on.
That ex-husband sounds... well. Ya. Anyway, my family is the same. obituaries were nearly written before I even got to explain fully. And still now, they have absolutely no idea of what is going on. Thing is, I can't divorce them! ;D
Cioa, Lorenzo
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If you want to plow through the primary literature, you can go to <www.pubmed.gov> and use the keyword strings <acoustic neuroma radiosurgery> and <acoustic neuroma microsurgery>. You will find doctors writing to doctors in peer reviewed journals, and the strong consensus favors radiosurgery in almost all circumstances for ANs under 3 cm. Personally, I think the age argument is bogus. If you have radiosurgery and need to get radiated again in 20 or 30 years, so what. Some doctors/researchers are beginning to say that radiosurgery is the best technique for cleaning up failed microsurgeries. I feel pretty strongly about this--my ENT insisted that I had to have surgery, but after reading the literature I decided otherwise. I took a few articles about radiosurgery to my PCP (who up to then believed the ENT), and after about five minutes he said, "This is what I would do." I had radiosurgery yesterday morning, and I took the dogs for a three mile walk yesterday afternoon. I feel fine, and my hearing is about the same as it was going in. If I'm in the tiny percentage of people whose radiosurgery doesn't work the first time, I'll have them do it again. But after reading the medical literature, I will never let anyone crack my head open for an AN.
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Mcintosh,
I am 48 yrs.old & recently diagnosed with a 2.5 cm AN. I have already confered with one nurotologist who suggest translab. I have appoitments in Feb. with another one and also a neurosurgeon.
I am going to look at the site you are talking about. Being a musician I would love to keep any amount of hearing I can. In fact loss of hearing is about my only symptom up to now.
I am having a very hard time with the idea of trading my situation right now for the possibilities of what will and might occur due to translab surgery. IE: facial nerve damage, complete loss of hearing on my right side.
Thanks for the lead on other possible choices.
Mykey
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Mykey--
I'll pass on what I've come up with re hearing preservation. Those who are doing multiple shot radiation (esp. Hopkins, Stanford) claim significantly higher rates of hearing preservation than with one shot radiation. But there's a problem getting accurate statistics on hearing preservation, because most people who are going in for AN treatment already have some hearing loss, and there is no clear standard for what constitutes "usable hearing." if you lose 5-10% of what you had going in, is that a sucesss or a loss? So it's hard to get precise comparable stats. I took one shot radiation because my AN was small (7mm), and there was a world class facility (Shands at U. Florida) nearby. If I were a musician, I might have opted for multiple shot radiation.
Good luck. I hope your case turns out as well as mine has, so far anyway. And absolutely do NOT let people who do surgery for a living tell you what to do. Find the best radiosurgery facility in your area and get their opinion.
Mac
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Hey Gang: met with Dr. Chang yesterday, who recommended that I go with CK treatment specifically as I have no balance issues. If I had balance issues, then he would have recommended the retro sigmoid approach that Dr. Jackler proposed. So I am in the process of scheduling the CK option. What I have found amazing in this process was how biased the treatment is towards surgery. And I really had given up hope that radiation wouldn't be a viable option for me. So to Brucifer, Mark and Phyl, THANK YOU for giving me the inspiration to go the extra step in research. I will always be so grateful to you three for taking the time to address my concerns.
I really would recommend to others to at least talk to some radio-surgeons. Some interesting facts that Dr. Chang discussed with me and my husband during the appointment are listed as follows:
1. Over 600 patients have been treated for acoustical neuromas, only one has failed to his knowledge.
2. No facial paralysis, hearing remains at currently level and/or slightly decreases-(I think he said 10% on average?? but not sure).
3. If I fall into the 1-2% that doesn’t' get the total bugger (tumor) killed off- a second radiation treatment is completely viable to kill off the remaining cells.
Also my husband questioned "why so many different" recommendations- Chang explained that in his case when he was studying in the 1990s- radio therapy was incorporated into his training. Also Chang gave a great analogy- each doctor has a tool box and he uses the tools that are what he is comfortable with. Most ENT's are only trained in surgery, hence the surgical option is the tool of preference. Chang was supportive of Jackler, i.e. he is one of the few surgeons who will recommend radio-surgery and he works with Jackler on a regular basis. So what makes Chang unique (and it was Lorenzo that pointed this out to me) is that he is truly unbiased- he has a tool box, he uses the tool that is best for the patient.
Conclusion: this pearchica gets to have cyber knife surgery. WOO HOO!
And to my ANer's, thanks for being so supportive. You all are 'da BEST' - Annie
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First, congratulations to Pearchica, whose story is very similar to mine. I was told by an ENT that I had to have surgery, and I had to do my own research (including a lot of help from this board) to discover otherwise. I had radiosurgery Tuesday, and I feel fine.
I understand Dr. Chang's toolbox analogy (and it's one I've heard before), and I know that doctors are reluctant to criticize other doctors, but I really do not accept that ENTs and other specialists are doing their jobs properly when they push surgery for small to medium ANs. From what I've read on this board, and from what I heard from my ENT, too many doctors rely way too heavily on personal experience and not on the most recent studies in journals like Neurosurgery and Journal of Neurosurgery. If I can find those studies, so should they. That's their job, and it affects people's lives when they do not give the most recent, state of the art advice.
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WOW! This discussion has been incredibly informative for me. I was dx a couple of weeks ago with a 1.4cm AN. I have loss of high frequency hearing in my L ear, but have a great deal of usable hearing which I would like to preserve if possible. My initial evaluation was with a head neck surgeon who gave me all the options with the positives and negatives. Today I spoke with Dr. Fayad at HEI, he also gave me all the options, but was very biased toward surgery and stated he thought that was the best way to go. I initially thought surgery was the best option for me, but after reading all these responses I'm not so sure now. I live in San Diego where there is a GK and CK facility. I plan to check out both. It sounds like most everyone is going with CK--is there a particular reason for that? From what I have read so far it sounds like the CK may be slightly more accurate. Is this true from what most of you have heard? It sounds like GK has been around much longer.
Confused!
Donna
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Hey Donna: hope you are well- I just got done with my first cyber knife treatment- and honestly it's like a body wrap at a spa- really I was so surprised at how relaxing the experience is. The Cyber Knife is a machine that moves around you- but it's like a big gun on the end of a pedestal and the beam aims at your tumor. You are in complete open space and the only restraint you have is the cyber mask which is sheet of cotton/nylon fabric that looks like a fishnet stocking. The mask keeps your head anchored but it's not stiff- I was able to breath just fine and swallow just fine- and get this- they had Eva Cassidy playing in the background (she's a wonderful artist that does great covers and has a jazzy, bluesy somewhat rock feel)... I have 2 more treatment sessions to go- about 45 minutes each (38 minutes actually zapping, maybe 5 minutes setup).
Gamma Knife is great also from what little I know- but it does involve a head frame- however you only go once...
I think either option would be great for you- and if your insurance will pay for it- I would reccomend Stanford. I went and had lunch, a glass of savingnon blanc and went shopping after my first treatment! Take care, Annie